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I had this thought (that surprise you?). For the last few months I have watched as Sierra Sandison, Miss Idaho, Miss America-top-online-vote-getter; as she shouted from the mountain tops about having diabetes while she competed for the Miss America crown. Took a lot of guts to do that, didn’t it?

Not easy to go out there and say, I wear an insulin pump. It became a big deal to our community. Our kids became inspired. Our kids, in some instances felt….well…less different. Diabetes in the national spotlight was such a bold move. We all saw it and thought how wonderful.

Now take it to your living room. If the media made such a big deal about Sierra having diabetes and wearing the pump, and ‘showing the world’; know that your child does this same thing every single day.

But without the fanfare.

If we thought it was such a big deal that someone would take ‘this diabetes thing’ to a level of showing the world……think, for just a second, what they go through everyday showing the world…..that it is okay. They make it okay.

Yes it’s brave to go out there like Sierra did, we all said it, we all came together and voted for her to prove the point. We as a community voted her into being a finalist. We voted. But yet, our kids do it every single day, don’t they? They ‘go out there’. They get little for their efforts, they are just being a kid. They put it out there every day.

Don’t let a person in the limelight be the only ‘thunder’ your child with diabetes hears. In between the million questions of ‘what was your number’, ‘write your number down’, and being the diabetes police we are every day……remember they do what Sierra does every day also. They just do it without the possibility of winning a crown.

What Sierra did was terrific………what all people with diabetes do every day…..is no less than heroic.

Ok, The Miss America Competition is over and Sierra Sandison did not win…….or did she? I guess the first question one needs to ask is; “What is your definition of win?” At the end of the night, did she wear the crown? If that is your definition: no she did not win.

I have a different definition of win and in my book and if you ask me (and many others), this young lady is about as big a winner as one would ever find. It’s my understanding that she was very hesitant to speak broadly of her diabetes back when this all started. It is easy to do nothing, say nothing. It is hard to take a stand. After consulting with many, including our community’s very own Miss America, Nicole Johnson, Sierra rethought her platform and decided to come out fully discussing her diabetes. Even as far as wearing the pump, VERY VISIBLY, during the swim suit competition.

HEY WORLD……..LOOK!!!!!!!!

It is my hope that this new attitude helps her. I hope it translates to her taking the best care possible; this is my hope. What I KNOW is that by her actions she has helped countless people out there (probably mostly kids) to say, “Hey, if she is okay, I am okay.” And THAT is a winner.

Helping others is always a winner.

Now we can stay idle here and not say anything…..but it is my hope that we all take the time—in fact, let’s over-fill Sierra’s email box with congratulatory letters thanking her for her efforts.

Take the time to drop her a quick note and congratulate her on giving more attention to T1 diabetes than we have seen in some time. She did not have to do that, but she did. And on any day of the week, that is a winner in my book. Let her know.

We are faced with many choices in this world. We are faced with many moments in this world. At any given moment there is a choice presented and the decision comes down to what road do we take? What time do we give? What is our choice to ‘just don’t do nothing”?

I find it amazing to work beside people (both professionally and as a volunteer) where ‘the norm’ is just not acceptable. We can choose to do something about an issue and just ‘pounce’ when someone gets it wrong; and scream and rant and rave what a ridiculous comment or action someone takes……..or we can choose to do something about it.

It’s easy to yell and scream about a football player who punches his fiancé in an elevator; it is another action to take calls at a 24 hour crisis center. It is easy to yell at someone for ‘getting diabetes wrong’, it is another action to get up and walk, ride, or advocate. It is easy to point a finger and yell and scream, “can you believe that?” It is another action to start a group to connect college students with diabetes.

My point?

Lifting voices is a good thing. Our voices NEED TO BE HEARD. But voices without action will die down once the screaming stops……and it will stop. Ask yourself, “What am I doing? Am I doing enough?” I cannot judge you, nor will I, each must ask themselves that question. Only you can answer.

I do know this…….there is much to do. Being on the sideline pales in comparison to being on the playing field. Are you on the sidelines? The ‘let someone else do it’ I am too busy (or whatever reason you think is justified) needs to stop. Everyone deals ‘with life’. Everyone can find some time, no matter how small, to help.

I have seen hundreds of stories of September 11th, 2001. I was a story of that day as well. Last night, while at Citifield to watch ‘my’ NY Mets (leave me alone I’ve heard all the comments that exist), there were ceremonies in remembrance on the anniversary of 9-1-1.

A man walked to the mound to throw out the first pitch. The announcer said but a few words; and the man dressed in red, with a red bandana tied to a baseball mitt, threw the first pitch. He is a dad. His story may be the most incredible one I have ever heard outside of the first responders and that of Flight 93.

I went home and found out more of the story. It truly is one of the most incredible stories I have witnessed. It’s a little long (thirteen minutes)……but I promise you…..it will be worth every second.

It has been a whirlwind since we first discussed the “Child’s Cry for Change”. Efforts to help educate…..well……the world on looking for the warning signs regarding diabetes; and the diagnosis therein. The goal is for the warning signs to be seen much sooner and that no child is diagnosed with T1 at death.

This is unacceptable.

The first result of the program resulted in a concentrated effort entitled “Get Diabetes Right” which is a FB page Kim May (a d-mom) and I created. Kim’s ad agency has done a monumental job on this effort. At the site, you can download posters or request a PDF of the files to be sent to you; which will be done free of charge, you can forward them on to Doc’s offices, school nurses, and anywhere else where people can see them. It is our hope to soon have a webpage in addition to the FB page, and also get ‘that map’ of electronic push pins to show where the posters have been distributed…..keep your eyes open.

I have also been in discussions with certain groups to create the huge traction on this that we have sought since the beginning. That is becoming closer to reality and, hopefully, I will be able to share more on that in the not too distant future. One has to first make contact, continue the process, allow groups to meet with their boards, and discuss internally. This is, but, an idea and I’m deeply committed to do all we can in every once of my ‘free time’ so no child ever dies at diagnosis again.

Each group I have met with, also has their agendas and to be included with this type of initiative, takes time. I have lost count on how many calls and meetings I have had but I know the traction is gripping the road and there WILL BE some exciting news when the discussions become more concrete ‘action steps’.

Presently, here is where I could use your help. When we started this together, I needed stories of mis-diagnosed families of T1 diabetes, even if it meant diagnosis at death. I created a document (or a book) of almost 40 pages. the stories were heart wrenching and to all who sent them in, I will share with you that you have impacted many in leadership positions. Your voices are being heard. The discussions in meetings I’ve had have resulted in reactions of genuine concern; and the willingness to consider how we can approach changing this landscape. YOU DID THAT! I now need to prove, by your stories and voices once again, that interventions HAVE HELPED.

Any child that had flu-like symptoms and a school nurse informed you that ‘it might be diabetes’ and you should have your child checked further; and it turned out that your child indeed did have T1 diabetes and the school nurse’s hunch/assessment was correct…..I need to collect those stories.

Please share in a few paragraphs what transpired and send it to me at karlya@optonline.net and in the subject line please write “School Nurse”. I need as many of these stories as I can find; include the state (and town, city etc), grade your child was in; do not use last names or the names of the school. For your school nurse just use their first letter of their name; “Mrs. A”, “Ms. A”, and/or “Mr. A”. Please share this article on any site where parents of kids with T1 post.

I need these as soon as you can send them. It is crucial to know when a diagnosis was also done correctly. For now, I just need any school nurse stories you have. Thank you for adding so much. There will come a time I will share this entire journey; but the present focus remains to create an education and awareness program of large-scale distribution. We will get there so that the Child’s Cry for Change……is heard….and heard loudly. Send me your stories as soon as convenient.

Did you ever see that commercial with the tagline, “What’s in your wallet?” The idea is that if their credit card is in your wallet, you would be better off…..interesting concept. I think that if you ever want to know a little about someone, look at their library, or at least at the pile of books near their bed, it will reveal a little bit of what interests them, and maybe even who they are.

My books are three-fold. Diabetes books. I probably have anything that was written in the last 3 years or so; and I have some that go back 20 years or more. If someone writes about a diabetes……well…..anything…..I want to read it. I also have folders and folders of magazine and research articles. I really cannot get enough of anything about diabetes.

Theatre Books. Plays, about plays, Shakespeare, acting books, scripts, a book-case full of them. It was my life for so long and I love when people ask me, “Do you still act at all?” Fourteen years since I last walked upon a stage and people still ask me. Cure first (as I promised to my daughter), acting later. But I read them when I ever I can find the time.

Books about people. I love to read stories about real people. Autobiographies, biographies, retrospect—I find people fascinating. How did they become who they are; leading the pack is Disney Wars, a must read for any fan of anything Disney—a real eye opener. Relationships between presidents and advisers (JFK, Roosevelt, Reagan, Carter, Nixon) celebrities (James Cagney, Marx Brothers, Alistair Sim), leaders (Martin Luther King, Bobby Kennedy, Newt Gingrich)…….what made them who they are? What drove them to ‘take on the world’?

Everything I read is always with ‘a grain of salt’ as they say. But you can find out a good deal if you open a book with an open mind. Such was the case of my reading True Compass: A Memoir. The insight to who Ted Kennedy was and why he was the “Lion” they said he was when it came to healthcare is explained in this book. It matters not your political views, the man was a Lion indeed. If it is a story of someone in real life, it interests me.

I’m not here today to suggest books to you but I am here to inform you that I have found a huge amount of joy, and more importantly knowledge, in reading about what interests me. There is much written online in columns and on posts, and many in the diabetes online community have also written books too. Their books not only will inform you, but it might give you a little insight to what makes those, you see all the time but may not really know, ‘tick’ as well.

We are an interesting lot, this diabetes family of ours. Find out a little more about them. Share with us. What would we see you reading today? What’s in your wallet…..er….uhm…..on your nightstand?

I always found it hard to keep my tongue in places when someone else thought they had a ‘better way’ to handle our children and their diabetes. I’m all for helpful hints and even encouragement, but telling me what to do??????…….that was a no-no.

And rarely, if ever, did we stand for it.

I’m not speaking of a discussion with give and take; this is the over-bearing opinions from people who ‘know better’.

As you raise your children, did your parents (or for that matter, did anyone) tell you what you should do? How did you handle that situation? In most cases you, probably, told them that you knew your child and that you had it covered. The question becomes; how strongly did you let the other person know to mind their own business?

Dealing with your child’s diabetes, is no different. There is the stopping cold answer: You cannot possibly know what this is about so please refrain from telling me what to do until you have dealt with this disease 24/7/365 for the last 3 1/2 (or whatever amount of time) years as I have; it is impossible. Here is the catch; when you are finished that statement…say nothing more but look them dead in the eyes until they move, squirm, or apologize.

There is the sweeter version: Thank you for your input, I’ll weigh what you say but the management is something we have pretty much mastered. It’s different for us who live this day-in-and-day-out than just being a spectator at what we do. Completely different. And again, just look at them until they respond.

There is the ‘WTF” answer: This gets ugly and usually ends up in a yelling match and no one wins.

There is the no response: This is where we grumble under our breath, walk away, and say nothing. No one wins here also.

If there is someone who spends time with you and they always seem to ‘know better’, and this includes parents, do not be afraid to ‘nip it in the bud’ immediately. Strong, loving, firm, and be done with it. It’s hard enough to deal with diabetes; tell Monday morning quarterbacks to keep their conversation to football. No one gets walked on………..unless they want to be walked on. Make the call.

We see it all the time. Either something happens, or a child is newly diagnosed, and the search for a celebrity is sought to help the child know that they can do anything with diabetes. Sometimes it’s new…..sometimes a reminder is needed. Celebrities are fabulous and it is great they share their stories. But I believe the examples we seek are much closer than we could ever imagine.

Along with a few friends, we have the video shot and we are in post production on creating a video of over 250 pictures (that you sent), and film from a Barton Camp, showing how OUR KIDS WITH DIABETES are in living life to the fullest. THEY are the examples to follow. They are the inspiration.

When I saw the picture I posted today, I burst into tears. Some at the sadness of seeing Marissa Hitchcock Town having diabetes for so long; but mostly at the joy of knowing who Marissa is and how she has lived and how diabetes has stopped her……from nothing. I’ve enjoyed a wonderful long-time friendship with my brother-in-arms, Jeff Hitchcock, his wonderful wife Brenda, and their family. I have known Marissa Hitchcock Town for a long time. I still get choked-up when I see the photo of Marissa at camp receiving an award for giving herself that first injection.

This photo of Marissa receiving her 25 year Lilly Journey Award is about as much an inspiration anyone else with diabetes needs to see.

Journey…..indeed.

Marissa will never tell you that this journey has been easy but she will tell you that it certainly has been an incredible one. We can look at the years Marissa spent pursuing her dream and receiving her nursing degree (and is now a Diabetes Nurse Educator), or her working with other kids for years, teaching them how to manage their diabetes, or even her growing up and helping so many other organizations and people in this world with diabetes; and most of all—we can see the happiness in her family with her husband and son.

Being diagnosed at age two is no picnic, this I know from experience with my own daughter. Watching your child DO EVERYTHING every other child does and have to stop to prod, prick, inject, and treat is not, by any means, part of the description of childhood that anyone would ever ask for. But to many of us, that is exactly what happened.

It’s not what happens to you that controls your life; it is WHAT YOU DO with what happens that determines your outcome. It is what YOU decide for your kids and/or yourself that ‘makes’ or ‘breaks’ a person. We all have had ‘life’ thrown at us. In this aspect, none of us are different. Some have had more than others.

It is no small feat to live with diabetes, doing it for 25 years on a journey that YOU navigate……….and thrive, THAT IS WORTH recognizing. So the next time you are looking for someone who has achieved much in this world, even at a young age, Marissa Hitchcock Town is a perfect example.

Marissa is not a celebrity. She does not play football in the NFL, race a car, swim across bodies of water, or climb Mt. Everest with diabetes. She does, HOWEVER, live a full and complete life with HER diabetes. And when all is said and done regarding living with diabetes, it is the best thing we can hope, pray, wish, and/or desire for any and all of our kids. Congratulations Marissa and thank you for all that you, and Adam, do for all of our kids with diabetes.

I know that may seem weird, I mean I’m not the principal nor a teacher, and surely not the school nurse…….I’m just a building; what do I have to say of any importance….right?

But I do.

First of all, your child looked great for the first day. Really. It was quite clear that you took much time to find ‘that perfect’ outfit that would show them off and also make sure they “looked cool” to their friends, and also their NEW friends. Just a word from me; you succeeded.

I noticed that your child has many diabetes supplies and that can only mean one thing; they have type 1 diabetes. I’m sorry for that, it must be difficult when they are so young. I have been around a long time and I have learned a thing or two which I would like to share with you.

Over the years I have had school officials who do everything they can to make a family feel comfortable with a child in school with diabetes; and there was also a time I thought they could have handled it much better. We will have to see what this year brings. But a few tips for you, if I may. I have noticed a few things over the years.

School officials have quite a few kids inside me for which they must give attention. It is so hard to get to know them and in the beginning it is tougher than usual. Every parent thinks THEIR CHILD is the only thing that matters, at home that works well; add them to the so many other kids?????—not so easy. Please remember that point.

Children with allergies–we have 42 this year, 3 kids with cystic fibrosis, 18 with special needs, 10 with other illnesses and we have 6 children this year with type 1 diabetes. Plus the school officials must tend to the normal everyday aspects of teaching. As you can see, there is much to handle.

You can be firm with them, they understand that this is your child, but always be polite. Anger and accusations just begins a divide. They more in control and organized you are, the more of an air of mutual cooperation will be received. You being organized is a HUGE help. The officials do not always understand everything with your child; be ready to explain it—-especially when our physical education teacher may completely get it wrong. GREAT TEACHER but the error is just a lack of understanding, teach it once and you will not have to do it again (usually), but be ready as everyone is not as in-tuned with your child as you are, I think you understand that point.

Sometimes the error may be pretty large…..it is at THAT time more than any other that your understanding is needed. I know all of the teachers, the school nurse, and even the custodial staff—-they all LOVE kids; this I know to be true. When a mistake is made, they may get pretty defensive if accused, or confronted, but in most cases they will feel horrible when they have time to think about it.

No one enters me everyday with any other idea but to make life for the kids better. Well maybe a few but no matter how hard I try (I even dropped a brick on one of them once, it did not help) there are a few ‘clunkers’, but you will find that in any business.

For the most part, the people inside me are ‘good people’ with GREAT intentions. Together we may all need to learn some things but patience, understanding, and explanations more than confrontations always will work better. Discuss with, not ‘down-to’; and we will all have a better year.

Thanks for listening today, I just wanted to come to you personally. Also, I cannot be everywhere all of the time……..but if you have tried everything you can to no avail……let me know. I have been known to drop a brick from time-to-time to knock some sense into a few folks.

Whether with your spouse, your child, between siblings, and any other combination in between. If you have a dollar to bet, you can bet that a conflict will arise in your home in the not-to-distant future.

When these incidents occur, it is no so easy to switch gears and go from heated discussion to loving care-take. There must be times when you are just ready to blow through the roof at something your child has done. And what happens? In the middle of the discussion you notice they are a bit pale, or their eyes are a bit glassy.

Uh…oh.

I actually do not know how many times we have been in that position in our 20+ years at this with one child and 5+ years of having two children with diabetes. What I know is that we have learned a very simple formula.

Diabetes trumps everything.

When it came to taking care of the moment, obviously, taking care of a low or a high took the front seat when needed.

As I look around the world today, in so many aspects from conflicts to war, I cannot help but think how much better we would all be if something could capture everyone’s attention from the negative to someone in need. When it is our child, we HAVE TO give the focus needed at that moment, right?

There is so much pain in so many health issues right now, don’t you think this world would be better off if some people reacted as we do when our child needs us? “We’ll get back to the conflict in a minute, we have to tend to these 10,000 homeless.” “Let’s place this anger on the back burner for a bit, there are 5,000 kids who have no medications and we need to help them.”

“But we will continue this later…….we can continue it later. This is more important.”

Later will come. And the anger/conflict will seem just a tad-less important and/or just not worth the energy to continue. Why cannot the world see this; why cannot the world act like this at a time when it is needed?

Sometimes anger makes us see the one and only point right in front of us. It is at these times that we must force ourselves to look to the right and the left. All of the energy is better spent in a humanity effort elsewhere….no?

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Disclaimer

This is my blog. I am not a medical professional and any medical written word is read somewhere else and will be credited accordingly. There is no substitution for YOUR medical team. I am not paid for what is written on this blog.